Wednesday, August 07, 2013

Jenny and Eve and the Statistics of Freedom

Many, many, years ago, I was hired to work in an 'experimental' group home. I wanted the job so badly because of the 'experiment' being run there. A group of people from a large facility, all of whom had relatively significant disabilities, many of whom had some significant problem behaviour, were to be moved to a community group home. Before they moved, data was collected on their daily living skills, their interactions and their problem behaviour. Once the data weighed enough, they packed their bags and moved.

We, who worked in the house, from supervisor's supervisor to we, the direct support providers, knew nothing of the specific skills, interactions or behaviours that had been the subject of such scrutiny and scribbling. We knew it had been done, but that's all we knew. We were just to go about providing service in the way we normally would. And we did. With gusto. This was the era in which the idea was dawning that maybe, just maybe, people with disabilities had a right to take their place in the community, as citizens. We all believed in that passionately.

Then, on occasion, measurements would be taken of the lives being lived in the community. Data was being complied. You see, what was being measured was simply the effect of living in the community on people who had been jailed for the crime of difference. Since we didn't know what was targeted, we couldn't work on any goals specific to what data had been collected there. Any changes, then, would be attributed to the experience of living in a neighbourhood, living with a certain degree of freedom.

Once we all knew the POINT of the research, the cost seemed high. We desperately wanted the people we had come to truly care about, truly value, to do well. To prove something to someone so that others could have the chance of coming home. We waited with anxiety to hear the results.

Well, it turns out that people simply did better, learned easier and adapted quickly to living in the community. We were relieved.

But think about this: Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity? Why wouldn't that just be assumed like it's assumed for everyone else. How different the difference must be if there has to be a mathematical validation to your civil liberties and your civil rights.

***
Later

***

I am sitting in a CBC studio, staring into the world's largest microphone, waiting to be asked questions about "the case of Eve". This case caused considerable debate amongst parents, amongst service providers and, of course, amongst people with disabilities in the self advocate movement. How I ended up there, in the studio, I don't know. But the interviewer told me that she was going to have to ask me, and maybe ask me aggressively, about the issues. Sexuality, Pregnancy, Rights - was all this going too far. She said that it was her duty to ask the questions that would be asked by people both for and against the decision. I told her I was ready. I kind of fibbed.

But as the interview went on, it occurred to me that people with disabilities had proven, statistically, that freedom is better than captivity. I already knew, and it was data not opinion, that voice and choice and all that comes with living freely was a good thing, more than that, a good thing that had benefits as a side effect. So, we went live. The questions flew. When it was over, I went to lunch with the other panelist, to a restaurant nearby and we chatted about the questions. They weren't hard to answer.

The facts were simple. A woman with a disability developed a relationship with a young man with a disability. The school got worried. They were separated. Eve's mother, worried that another relationship might end in pregnancy sought to have her child sterilised. Eve objected. It took a long time but eventually, her voice was heard, right straight across the country. People with disabilities needed to be consulted about issues regarding their bodies.

But think about this: Why would people with disabilities be the only minority to have to go to court in order to prevent surgical procedures being performed on them against their clearly expressed wishes? Why wouldn't it just be assumed that a person's choice, a person's voice, be a determining factor in what is done with their bodies? How different the difference must be if there has to be a Supreme Court decision to support and a group of men in wigs to stand behind one young woman for her voice to be heard?

Freedom fighters always come in smaller packages than you might imagine. As it has been well publicised, Jenny is a young woman with Down Syndrome who had been forced, against her will, to live in a group home instead of her preferred arrangement with friends. Shut off from others, she had her cell phone removed, had her computer taken away and was restricted from leaving the house without permission or scrutiny. She spoke clearly. She spoke often. She spoke with unwavering commitment. The choice was HERS!! And it was she alone who would make decisions about her life.

Her mother and step-father fought to maintain guardianship and control. They wanted her to live where they wanted her to live, regardless of the fact that her voice was clear, and strong, and consistent. As these things do, it went to court. And right up to the day the decision was made, pundits and commentators stated that it was difficult to predict what the court would do. Sure she was clear. Sure she was consistent. Sure she was passionate about her right to make this choice. But, and to everyone it seemed - it was a very big but indeed, she had Down Syndrome.

Aren't they meek?

Aren't they mild?

Aren't they full of smiles?

We have a trick, we do, those of us who work with or otherwise support people with disabilities. We believe in their competence when they are compliant - when they agree with us, when they submit to our authority, when they bow to the hierarchy of the natural order of things. We determine incompetence when they have the temerity to dismiss our opinions as interesting but irrelevant. Yep, we use competence as the reward for compliance and submissiveness.

But Jenny and her single, strong, voice made it clear that she would be heard. And she was. She won her freedom, she won her choice.

And we already know that freedom is statistically better than captivity.

But think about this: Why is this battle being fought over and over and over again? What is it about the freedom of people with disabilities that is so frightening that battle after battle after battle has to be fought? Why does the idea that people with disabilities are citizens with rights upset us all so very much.

Jenny.

Take a seat, on the bus, right next to Rosa - I think you'd have a lot to talk about.

This is a great article, except why do you keep saying that pwd are the *only* ones who still have to prove that they belong in freedom instead of captivity? Seems like black and brown ppl and muslims and trans* people (just to name a few groups) are still being asked to prove it. Maybe it's only in the US but I kind of think it isn't just us.

Beautifully said. In so many ways people with intellectual and mental disabilities are the only people that can have their rights taken away and be imprisoned just for being different. I am not discounting the struggle of other groups and that discrimination is rampant in so many ways, but it is the person with the intellectual disability that can be put in the prison of another's choosing without having committed any crime other than just being.I have been waiting for your thoughts on the outcome of this case Dave. Worth the wait.Jamie Lynn

Support for people who have intellectual disabilities to experience freedom (the same freedom accessible to other citizens) is what we should be doing - as a sector, as a province, as a country, as a society...or, phrased in industry language "least restrictive environment" - should be the ASSUMPTION and nobody should have to fight for their right to freedom. It should be up to someone else to prove that they are NOT entitled to their freedoms - as is the case for citizens who are not labeled with an intellectual disability. But instead, the assumed norms remain: group home, some sort of program, and primarily paid people to interact with. Support for people to experience freedom is considered radical, innovative, experimental. This must change.

This is a great piece, Dave, and it shows the ways in which disability is an issue of civil rights that needs to be addressed as such.

But I think you're overstating in one area: I don't think that people with disabilities are the only group of people who have to prove their worthiness to be free. In the US, the prison-industrial complex incarcerates black men at a highly disproportionate rate, drug laws favor white offenders over black, and the Stand Your Ground law is based on the cultural presumption that a white man has more of a right to stand on any ground than a black man. Many Muslims were disappeared into Gitmo post 9/11 just for being Muslim. Trans and genderqueer people face extremely high levels of violence and discrimination. And on and on and on.

One of the defining aspects of oppression is that oppressed people have to fight to occupy space with the same freedom and safety as privileged people. There are always excuses for stripping people of this right: the idea of Trayvon being killed because he wore a hoodie is just as ludicrous as the idea that Jenny needs guardianship because she had a bike accident. Lots of white people wear hoodies and aren't killed. Lots of nondisabled people have bike accidents and don't lose their civil rights. I think that rather than make each of these kinds of oppression look unique, we need to start showing how they are all of a piece -- that people routinely lose their rights to live in freedom and sometimes, to live at all, based on what their bodies look like and how they work. Only by showing the similarities are we going to convince the general public that disability is a civil rights issue. Every time we put it in a special category, we run the risk of enabling other people to make us a special case.

But Rachel there is a slight difference with people with disabilities and a presumption of innate incompetence, no? (I could be wrong in my thinking, I'm always aware of my potential to be wrong!) I agree with you that the battle is fight repeatedly in all groups of difference but itdoes seem to me that in the discussion of disabilities, especially intellectual disabilities, there's an assumption that a person's competence must be proved first. More like a person must prove their right to simply exist in the world. Not that I don't see that with other groups, I do, and it is all the same big picture, but it does seem to me that the discussion on disability slants towards the competence issue more often than in other places. But maybe that is my own ableist perception leaking through?

As a fat gay man, I know that prejudice shows itself in a variety of ways. By writing what I wrote I am NOT saying that prejudice exists only for those with intellectual disabilities or that what they experience is worse than other people. I'm saying that prejudices show themselves in different ways to different people - I am going to write about this in tomorrow's blog.

Great post as usual David. As a parent to a child with Down syndrome one thing that disturbed me about Jenny's case, and something I see again and again, is that it was her own mother who was fighting her freedom. Too often I hear from parents who love to assure me that "I'll see" when my daughter is older. I'll see that you can't take care of herself, that she'll not be independent. That she'll not be capable of taking care of herself. I wonder how this plays in how the world sees the rights and competence of our children.

I am cautious about the idea about PWD being seen as the only people not seeming to deserve freedom. I suspect that you are right to a degree. I certainly don't see other minority groups fighting in court to live on their own. BUT I do see that they are often restricted in freedom in ways that are less obvious. And I think it is about their competence...just perhaps not intellectual competence. I'm looking forward to your post tomorrow.

Jisun, blacks have been victimized by the suggestion of innate incompetence for centuries. It's one of the bases of racism. Black women were sterilized for being "feeble-minded" only because they were black. Black kids were considered innately less intelligent because they scored low on culturally biased IQ tests. Young black men are considered less than competent in their ability to be nonviolent and law-abiding; it's what gets them killed. Slavery was based on the assumption that black people were lesser beings, intellectually and morally. It's the identification of oppressed groups with disability that deepens their oppression so in that sense, disability bigotry is at the heart of many other oppressions. But I don't think that it's entirely different in kind.

Dave, I totally get what you're saying. You're not saying that others aren't discriminated against. You're saying that the discrimination is completely different. This is where I disagree. I think that discrimination is all about competence. Gay men aren't considered competent enough in love to be married. Black men aren't considered competent to walk down the street without attacking someone. Trans people aren't considered competent to describe their own experiences. Competence is one of the things by which our culture measures humanity, and it's a horror story for people in a number of different groups.

It's not that discrimination doesn't play out differently; it does. But a lot of people have to prove their basic right to be free, and that means that a lot of people live their lives in the same fear that disabled people do.

@JisunMy husband gets presumed incompetent not because of his invisible disability (that would be what happened in his origin country) but because he's visibly a Hispanic immigrant.

Similarly, Blacks in the US are often wrongly assumed to be less intelligent *and* less moral/ethical.

Trans* ppl are often wrongly assumed to be some kind of freaks or perverts, therefore not real ppl. they may be presumed competent at something, but good luck finding anyone who'd let them do it once they know the person is trans.

Discrimination of all kinds is far from eradicated - gender, race, age, the list is long.

Each experience (and the battle for freedom) is also unique.

With all due respect, we need some perspective here on where people who have intellectual disabilities stand with respect to the systemic discrimination they are facing.

We are talking about an adult who has not committed a crime, has not threatened others, and has not threatened herself, being forced to live in staff-managed segregated environment against her expressed wishes.

And remember, that is the common ASSUMPTION for every other Jenny Hatch out there who is trapped in similar systems - unlike Jenny, most are far too isolated and powerless to even question their lack of freedom, let alone challenge it.

A lot of people don't really understand why this story is "news" - to me it is news not because a person who has an intellectual disability was experiencing denial of fundamental human freedoms (that's the sad state of normal) - it is news because a) the person said NO b) the person found a way for the NO to be listened to (the latter is highly uncommon).

With respect to other groups that experience daily discrimination, some of it is systemic, but much of it is attitudinal - because at least on paper, those persecuted groups have achieved equality - the legal assumption that they have the same rights as others.

I am not questioning that this does not mean they endure serious discrimination - I am just pointing out that it is highly unlikely they would have to go to court to argue for the right to live in an apartment instead of being forced into shared accommodations against their will.

We don't need to minimize the importance of Jenny Hatch and her battle for freedom (and what it means to other people with intellectual disabilities) in order to recognize that many other groups of people have fought and continue to fight on their own road to equality.

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Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

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There are those who have affected the course of my work and my career. I wish to remember them here:

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